A Detour

Bad News and Good News:  The bad news is that at I am not a viable candidate for a Blood and Marrow Transplant; the good news is that I am  not a viable candidate for a Blood and Marrow Transplant.  Say what?

Late afternoon on Thursday we (John, Pat Dorn and I) met with Dr Hogan, one of Mayo Clinic's hematologists/oncologists and an expert in BMT transplants. We had seen him in August and after that meeting, I was pretty sure I didn't want to pursue a transplant. But after encouragement from others--family, friends and medical personnel--I decided to kick the door wide open, the door I'd left open in August, in order to at least explore my eligibility.  Nothing to lose, right?

Well, It was the right decision and I didn't lose a darn thing in the process.  In fact, I think if I would have lost had I NOT pursued the exploration.  I can say with satisfaction that I did everything I could and left no stone unturned.

Here's the gist of our meeting:
Blood and Marrow Transplants are dicey for everyone, but dicier for people who have a number of risk factors.  The disease itself, of course, is the biggest risk factor, but pile on a few others and the chance of a successful outcome is greatly diminished.  The risk factors I'm dealing with include my age, the nature of my particular type of Myelodysplastic Syndrome (atypical, with a relatively rare chromosome abnormality), and a history of breast cancer (even though my breast cancer was teeny tiny, removed with a lumpectomy).

What Dr. Hogan was most worried about was that even though I have good health in many ways--low blood pressure, low cholesterol, no history of heart problems--my disease is not under control enough to consider a transplant. I've had only one round of chemo, not enough to determine the efficacy of the drug.  He said I really need to complete 4 or 5 cycles, followed by a bone marrow biopsy, to know if my blood has gotten healthy enough for a transplant.

Add an extremely short list of possible donors to the mix and it becomes formidable.  My siblings are really the only donors to consider because, in my case, anything less than a perfect match would be another risk factor. 

I asked Dr. Hogan what he would say if I insisted that we go through with a transplant.  His answer was sobering.  He said, "I would have grave concerns if we were to attempt it." 

So, here's where we are...
I will continue to have transfusions as needed while I'm having chemo treatments.  In February or March, assuming everything goes as planned, I'll have the biopsy and we'll see.  Dr. Hogan said it's always possible to revisit a transplant if my disease stabilizes.   If, after another evaluation, I'm still not a good candidate, there are other options, clinical trials among them.

So how is this Good News?

Because I actually felt a sense of relief by the time our meeting was over.  Quality of life is more important to me than length of life and post transplant life, with all of those risk factors working against a positive outcome, would most likely be a hell more hellish than Hell. 

My sister-in-law said that  if they told you that a there was a 90% chance of a successful cure after you put in the biggest fight of your life, (which, by the way would never happen for anyone) you may be more willing to go the distance no matter how hard it is.  My chance is under 40%, probably closer to 10%, and that's the deal breaker.

I want to live the rest of my life as normally as possible.  I want to spend time with my husband, our children and grandchildren.  I want to visit with my siblings, my in-laws, whether by phone or in person.  I want to stay connected to my friends.  I don't know how the future's gonna look, because my crystal ball is on the fritz, but I hope to live each day to its fullest even if that means only reading the morning paper.

Next week I have a blood draw on Monday and another on Thursday.  If a transfusion is necessary, it would probably be on Friday.  Thanksgiving week I will start my second round of treatment in Chemo Bay. 

We'll be hosting our family again the Saturday after Thanksgiving, if all goes according to plan. We'll make the turkey and all the rest will be provided by the kids.  If there's some reason they can't come here (I'm sick, the kids are sick), the back-up plan is to go to Megan and Troy's.  We will have much to be thankful for this year.